More Than Meets the Eye: Learning to Live with Hidden Burns

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by Kathy Edwards, PhD

Those who meet Elaina Meier or David Vogel for the first time don’t realize they are burn survivors. The scars that tell their stories at a glance have faded or are covered by clothing. It’s only when you hear Elaina talk about facilitating the Phoenix Society for Burn Survivors’ online chat or David talk about working with a burn survivor support group in Boston that you realize there’s more to the story.

Facing a Unique Set of Challenges

“Hidden” burns present a unique set of challenges for burn survivors. He or she may not be “seen” by others as a burn survivor, which, according to both Elaina and David, can have its advantages and disadvantages.

Because the scars can be covered by clothing, talking about the injury is optional. They can choose when and where to tell the story, or choose to not tell it at all.

David VogelHowever, the question of whether to “show or “not show” their scars may create an inordinate amount of angst when they consider wearing bathing suits, shorts, sandals, or sleeveless tops. They may struggle with intimacy and wonder how and when to talk about their burn injury in new romantic relationships.

Adapting to a New You

David recalls that after he left the rehab hospital many people didn’t understand the extent of his injuries or the reason for his lengthy hospitalization and recovery. Given what he’d been through, he was struck by the indifference shown to him by his coworkers and acquaintances.

He had been in a drug-induced coma for weeks due to burns from a house fire. He suffered smoke inhalation and had to relearn how to breathe and swallow on his own. He went through withdrawal from morphine and pain management drugs. There were moments that sent his whole body into a panic, like the time he burned his finger on the stove or when he smelled smoke from a chimney while walking down the street.

For the first year, David wore pressure garments and looked like a burn survivor. He remembers seeing people stare and hesitate when he went to shake hands. Gradually his hair grew back and covered the parts of his ears where cartilage was missing. Over time his grafts began to fade and fewer people noticed that he looked different. It surprised him when he realized that many people no longer saw him as a burn survivor.

“There is a window of time when people empathize with a burn injury, but the healing process takes much longer than that,” David reflects. “Once you look normal, you are expected to be over it.”

Although David could see the positive side to the dwindling reactions, it required yet another adjustment to his self-concept and body image.

David says that since his burn injury and recovery he has more empathy for others. “We all carry hidden traumas and even when you see a survivor with very visible scars, you are only seeing some of the injury,” he has realized. “A burn survivor may have lost loved ones in a fire. You can’t see that from the outside.”

At the time of her injury, Elaina was a college athlete. But returning to the locker room was difficult, not only because of her scars but because she no longer felt likean athlete. However, in the process of losing weight, regaining range of motion, and rebuilding muscle after her burn, Elaina learned to appreciate and value parts of her body she had not valued previously.

“Instead of fixating on my scars, I learned to look at the things about my body that I liked,” she explains. “Before I looked in the mirror, I set my focus and intention on seeing the positive things instead of fixating on my scars. In time I was able to see the positive aspects of my body image instead of the scars.”

Ann Cook, MSW, a social worker at the Intermountain Burn Center, echoes the value of those positive messages. “It’s human nature to focus on the negatives and to have negative self-talk. We need to work to give ourselves positive messages.”

Ann recommends a new app, Red Dot Now (available for iPhone and Android), that is designed to help create positive changes and counter negative self-talk. (Note: This app requires a fee to download. Other similar useful resources may be available on the Web free of charge.) The app buzzes throughout the day and asks you to stop and examine what you are thinking and feeling at that moment. When you have a strong image about something, ask yourself, “Is it real? Is it true in this moment?” Learn to accept the situation and respond, “It is what it is, so how can I manage it?”

Ann suggests that it is better to say, “I’m managing the issue” than to say, “I’m struggling with the issue.” She encourages burn survivors to remember that everyone has something that makes them feel insecure about their body image. “You may have a friend who’s had a mastectomy because of breast cancer. Or someone who has hidden surgical scars they feel ashamed of, or a skin condition,” she points out. Everyone has challenges to overcome.

When you start to feel self-conscious, it can help to realize that you are probably focusing on the flaws much more than other people are, she suggests. To illustrate that point, Ann recalled a conversation between two teenagers attending a burn camp. The young man said he felt embarrassed by the burns on his legs and thought people believed he was ugly and weird. The young female camper responded, “This is your issue. No one else is thinking that about you.”

Elaina found that it took time to adapt to a new body image. She had to go at her own pace. “There were times and seasons when folks wanted to force the issue and I wasn’t ready,” she recalls.

Is It Necessary to Explain?

Elaina Meier (right) with fellow online chat facilitator Richard CasiasElaina also spent time figuring out the best way to tell others about her burn injury. Both Elaina and David find it liberating that they no longer feel the need to tell everyone they meet about their burn injury. They have learned to tell their stories on a “need to know” basis.

After some trial and error and a few “Aha!” moments, Elaina is willing to share what has worked for her. “It’s definitely a challenge, especially in a dating situation,” Elaina says, “You don’t want it to be the thing you lead with, but you also don’t want to wait too long.”

Because her burns have become an integral part of her identity, Elaina feels that it shouldn’t be a stand-alone conversation. She suggests sharing information about the burn injury organically so it’s not a “honey, we need to talk” moment. Instead she might say something like, “I’ve got burn support next Tuesday and I’m looking forward to going so we can’t schedule anything else that night.” That statement is a cue that she experienced a burn injury and she’s okay talking about it.

Elaina suggests that the easiest way to start talking about a burn injury is to practice having the conversation with friends and family. “Build it into your day-today relationships in a way that’s balanced, that’s proportionate to where you are in your recovery,” Elaina says. Practicing with friends will make it easier to talk about burns in a romantic context.

Beyond Surviving Tools for Thriving After Burn Injury

Practice conversations, such as those recommended by Elaina Meier, are just one of the many strategies presented in Beyond Surviving: Tools for Thriving After Burn Injury. This course, offered through the Phoenix Society’s Online Learning Community, provides burn survivors and their families with the skills they need to be comfortable, confident, and competent in any social, work, or school situation. To access this program and other Online Learning content, all free of charge, visit and join the Online Community.

What About Intimacy?

Ann suggests that a burn survivor’s response to intimacy has as much to do with their past experiences and feelings about intimacy as it does with the burn injury itself. Their feelings may be influenced by past experiences in relationships, values, and beliefs, as well as the messages they received about intimacy from their parents.

“Any time you reach for new goals, your unresolved issues may come up,” Ann explains. A new relationship can trigger unresolved issues about body image, intimacy, and trust.

“Think of the triggers as a gift because they make you aware of unconscious processes like anxiety or fear,” she suggests. “The triggers help you learn more about yourself and what’s going to be in your way.”

Some people may need professional help to move beyond the triggers into a place of growth. Others may find that energy-refocusing tools, such as yoga, meditation, Reiki, positive affirmations, visualizations, and breath work, can help overcome issues related to trauma, body image, and intimacy. These techniques create changes on the inside that influence the way you think about your body image and present yourself on the outside. Keep in mind that they are not only useful for people with hidden burns. Anyone who has experienced trauma, or had a hard time accepting their body image, or experienced fear when starting a new relationship may find it helpful to reframe the experience and channel energy in a positive direction.

For further information on this topic, see the Resource Center and Phoenix Programs sections of the Phoenix Society website, http://www.phoenix-society.org.

 

This story is an excerpt from The Phoenix Society’s® Burn Support News, Issue 1, 2014. Burn Support News is a quarterly publication that contains articles on the emotional, psychological, and social aspects of burn recovery.  All Rights Reserved.
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